Bespoke training and support for rare disease patient groups

 

Congratulations on taking a leap of faith! We’re thrilled that you’d like to apply for our guided programmes to further your advocacy skills, knowledge and confidence.

 

Each guided programme below offers bespoke training and tailored support to help you reach your personal and professional goals. Whether your patient group is just starting out or you’d like to improve upon your group’s success, our guided programmes are right for you!

Discover what our Patient Group Mentoring, Recruiting a Rare Board and masterclasses have to offer now.

Patient Group Mentoring

 

Our Patient Group Mentoring Programme gives patient groups the tools, confidence and connections needed to accomplish their group’s specific goals by pairing them with an experienced mentor for a year.

Mentors will share their experience and skills to help groups:

  • Establish and develop a professional group
  • Build their capacity and streamline their work to improve their support offerings
  • Implement new projects
  • Increase their involvement in research and drug development

Patient groups are never too small, too uncertain or too big to apply for this programme. All that is required is a clear idea of what you want to achieve, the motivation to make it happen and the time to put your ideas into action.

When I first started working for our organisation, I had no experience in the charity world. Being part of the mentoring scheme has helped me immensely in building my confidence and taking our charity forward. Thank you.
– Patient Group Mentee, 2020-21 programme

We’ve had mentors and mentees from all over the world join this programme, including Germany, France, Israel, Canada, USA and UK. We’ve seen pairs secure National Lottery Funding, get a drug approved by NICE, register as a charity and forge partnerships with industry and fellow patient groups to bring about real change. Whatever your goals and whatever your passions, we’ll work to pair you with a mentor who has the skills and expertise needed to set the wheels in motion.

Read Bhavna and Kamlesh’s mentoring case study to get an inside look at the programme and apply when recruitment opens!

 

Recruiting a Rare Board

 

We’ve teamed up with the trustee recruitment experts, Getting on Board, to bring you Recruiting a Rare Board!

A strong, diverse board of trustees is crucial to ensuring a patient group’s success. When a patient organisation just starts out, friends, family and colleagues often occupy the group’s trustee board. This is helpful at the start, but in time groups find that their board lacks the skills needed to help the organisation develop and grow. Board members’ perspectives are too similar to each other and progress is quickly hindered.

Trustees are a group’s first port of call for help and expertise. They act as a pool of willing volunteers who will help to find the additional time, resources and people needed to support the organisation’s growth. Recruiting a Rare Board teaches rare disease patient groups how to recruit and retain trustees in a professional manner. We’ll walk you through the process of trustee recruitment, and help you assess the skills, experience and knowledge of your current board to identify its blind spots. By the end of this programme, you’ll enjoy a group of interesting, diverse and skilled individuals applying to help you deliver your mission. This is your chance to add new experience to your board to help you progress as a rare disease patient group!

Still not convinced?

Watch our CEO, Dr Rick Thompson, and Getting On Board’s Programme Director, Kathryn Sullivan, discuss our Recruiting a Rare Board programme in depth.

 

Masterclasses

 

Our masterclasses offer bespoke training and tailored support for rare disease patient groups and leaders. These individuals are key advocates for their community. They campaign for their community’s interests, drive research into their disease and support patients and families as they live with and manage their rare condition. Patient organisations and leaders aid their community, so we are here to aid them.

Each masterclass delves into a specific topic that gives attendees the skills and confidence needed to seize every opportunity that comes their way. We help patient groups and leaders be the best advocate for their community through intense, short-burst style sessions, which give participants the practical skills needed to better themselves and their group that day. Our masterclasses are hands-on sessions where groups and individuals achieve a specific outcome that’s designed to help them reach their goals. If you want to grow your advocacy skills, knowledge and confidence, attend an upcoming masterclass today!

How do I get involved?

Our Patient Group Mentoring and Recruiting a Rare Board trustee recruitment programmes run on a fixed term with spaces opening throughout the year. Each masterclass will be announced on our Events page, so keep an eye out for them!

If you’d like to express your interest in applying to our guided programmes, please complete the following form. If you want to be amongst the first to hear about open recruitment calls for our guided programmes, subscribe to our Community Mailing List now!

Bespoke training and support for rare disease patient groups

 

Congratulations on taking a leap of faith! We’re thrilled that you’d like to apply for our guided programmes to further your advocacy skills, knowledge and confidence.

 

Read more

Each guided programme below offers bespoke training and tailored support to help you reach your personal and professional goals. Whether your patient group is just starting out or you’d like to improve upon your group’s success, our guided programmes are right for you!

Discover what our Patient Group Mentoring, Recruiting a Rare Board and masterclasses have to offer now.

Patient Group Mentoring

 

Our Patient Group Mentoring Programme gives patient groups the tools, confidence and connections needed to accomplish their group’s specific goals by pairing them with an experienced mentor for a year.

Mentors will share their experience and skills to help groups:

  • Establish and develop a professional group
  • Build their capacity and streamline their work to improve their support offerings
  • Implement new projects
  • Increase their involvement in research and drug development

Patient groups are never too small, too uncertain or too big to apply for this programme. All that is required is a clear idea of what you want to achieve, the motivation to make it happen and the time to put your ideas into action.

When I first started working for our organisation, I had no experience in the charity world. Being part of the mentoring scheme has helped me immensely in building my confidence and taking our charity forward. Thank you.
– Patient Group Mentee, 2020-21 programme

We’ve had mentors and mentees from all over the world join this programme, including Germany, France, Israel, Canada, USA and UK. We’ve seen pairs secure National Lottery Funding, get a drug approved by NICE, register as a charity and forge partnerships with industry and fellow patient groups to bring about real change. Whatever your goals and whatever your passions, we’ll work to pair you with a mentor who has the skills and expertise needed to set the wheels in motion.

Read Bhavna and Kamlesh’s mentoring case study to get an inside look at the programme and apply when recruitment opens!

 

Recruiting a Rare Board

 

We’ve teamed up with the trustee recruitment experts, Getting on Board, to bring you Recruiting a Rare Board!

A strong, diverse board of trustees is crucial to ensuring a patient group’s success. When a patient organisation just starts out, friends, family and colleagues often occupy the group’s trustee board. This is helpful at the start, but in time groups find that their board lacks the skills needed to help the organisation develop and grow. Board members’ perspectives are too similar to each other and progress is quickly hindered.

Trustees are a group’s first port of call for help and expertise. They act as a pool of willing volunteers who will help to find the additional time, resources and people needed to support the organisation’s growth. Recruiting a Rare Board teaches rare disease patient groups how to recruit and retain trustees in a professional manner. We’ll walk you through the process of trustee recruitment, and help you assess the skills, experience and knowledge of your current board to identify its blind spots. By the end of this programme, you’ll enjoy a group of interesting, diverse and skilled individuals applying to help you deliver your mission. This is your chance to add new experience to your board to help you progress as a rare disease patient group!

Still not convinced?

Watch our CEO, Dr Rick Thompson, and Getting On Board’s Programme Director, Kathryn Sullivan, discuss our Recruiting a Rare Board programme in depth.

 

Masterclasses

 

Our masterclasses offer bespoke training and tailored support for rare disease patient groups and leaders. These individuals are key advocates for their community. They campaign for their community’s interests, drive research into their disease and support patients and families as they live with and manage their rare condition. Patient organisations and leaders aid their community, so we are here to aid them.

Each masterclass delves into a specific topic that gives attendees the skills and confidence needed to seize every opportunity that comes their way. We help patient groups and leaders be the best advocate for their community through intense, short-burst style sessions, which give participants the practical skills needed to better themselves and their group that day. Our masterclasses are hands-on sessions where groups and individuals achieve a specific outcome that’s designed to help them reach their goals. If you want to grow your advocacy skills, knowledge and confidence, attend an upcoming masterclass today!

How do I get involved?

Our Patient Group Mentoring and Recruiting a Rare Board trustee recruitment programmes run on a fixed term with spaces opening throughout the year. Each masterclass will be announced on our Events page, so keep an eye out for them!

If you’d like to express your interest in applying to our guided programmes, please complete the following form. If you want to be amongst the first to hear about open recruitment calls for our guided programmes, subscribe to our Community Mailing List now!